I can't believe my baby girl will be 8 years old on Sunday! Wow...where does the time go?

We were supper blessed to have her, after 11 years, 3 months and 22 days, many infertility procedures, including IVF, and many, many heart-breaking days...she was worth it all though!!! 

What an amazing tattoo! I just had to share... (it's not mine, but another Moyamoya Survivor's)

There are so many out there trying to promote awareness for this extremely rare disease. There is so much unknown, there are even some doctors who have never heard of it. We need to make sure we get the word out, and educate all who will listen!

I just spent 3 days with a sick child. My daughter had the flu...not fun! She had a fever of 102*, and was throwing up. I feel so helpless when my children are sick; I want to take away their pain and make them better, but all I can do it make them as comfortable as possible and tend to their every demand. Thankfully she is better today, and back in school. I'm a little nervous because my stomach has been feeling volatile since last night. I sure hope I don't get it now. Or worse...her younger brother!

Speaking of younger brother, he woke up this morning wet. Poor guy had a dream he was going to the bathroom and actually went in his sleep. He's six years old, I know it was an accident, but now it's one more thing I have to clean. On top of puked on blankets and towel, now I get to figure out how to clean a mattress. (I had a cover on it for years and took it off because he was old enough a few months back. Oh well...) He felt bad enough, didn't want to add any stress, shame or guilt to him. I know how he feels, even as an adult this has almost happened to me.

So, today I will be washing tons of towels and bedding. I'm so tired and warn out too, taking care of sick kids has worn me out, I think. I need to get back to exercising, that always makes me feel better. But, I hurt my knee and am limited to what I can do now because of it. At least I can still do Jilliam Michaels' circuit weight training. Just not the Jumping Jacks!

Beautiful sentiments, that are sometime hard to put into words. This was written by Reagan Wilson, Moyamoya survivor. I think it says it all...

Today is my 5 year Anniversary since surgery at Stanford. I thought I would share something with you that I wrote for this day! Just a little something about some things I've felt as I have walked through this Moyamoya journey!

----------------Refined-----------------
Refined by something that left untouched,
Would have resulted in the end of tomorrows.
Stumbling upon a path that created
A possibility for life to go on.
Life that we often measure by our wants
Or what we can obtain.
Life in its beauty is immeasurable
Not defined by the so called “treasures” we covet.
Strangers taking a moment of time to make a difference
And giving a chance for a lifetime of tomorrows.
A chance to watch children grow.
To be an inspiring person from the strength
Gained from the refinement.
Refining is not an easy road and often a path not taken.
It is met with tears, fears and frustrations.
A roller coaster of emotions
Battling to overcome the struggles that come with what has been handed.
Wanting many times to give up
But knowing there are those waiting for you to be strong.
No choice but to fall on your knees
And cry out for intervention.
To fight back with all you have
And learn….
That when life knocks you down
You best get up with a smile on your face
And laughter filling the air.
To give of yourself freely
And tomorrow when you wake up,
Give of yourself some more…
For once your tomorrows were numbered
And now they are cherished moments where the meaning of life is found.

Today I am grateful and happy that my knee, while still a little crunchy, is well enough that I can get back to Jillian's abuse, LOL! (I signed up for JillianMichaels.com, for weight loss and exercise). I completed her 5 circuit program today in a 1 hour record (for me) and I now feel pumped and ready to go. I am also grateful for 80's "Hair Guitar" music (channel 829) and that I am well enough to be able to dance like a crazy woman to it in my living room! (Yes, I AM that old. I will be 42 tomorrow, and am super blessed to add another year to my life. It's a gift, and I won't take it for granted!).

ROCK ON!

Moyamoya Awareness...

Here is another good link to a story with a woman with Moyamoya. Her mother works at Stanford, in the Moyamoya area (Neurology) so they really advocate for it.

One woman's experience with Moyamoya Disease. I just wanted to share it...by Linda M. Arnold...survivor.

Linda's story.